Who's got two thumbs and no working kidneys?

[Fire Me Boy!]

Hey everyone. I initially wrote this after a discussion on dialysis tech (this new belt-style 24-hour dialysis device) and donors. I was going to post on Facebook but chickened out. I can't really explain. But I feel somewhat compelled, so if you take the time to read it, thanks. It's kind of stream of consciousness, so sorry for the wall of text.

Anything that can improve the process is needed. I have a perspective that I think most don’t know, and I want to take the opportunity to maybe help illustrate for some of you willing to read this whole post why we need to do more. This isn’t a pity party. Don't pity me. Dialysis sucks, and it's not just the time commitment. There's emotional stress, physical stress, even social ramifications - not just on the patient, but on family, too. One in 10 people in the U.S. has some type of kidney disease; some 400K on dialysis, 100K + in the U.S. alone on the kidney transplant list, but only 20K donors. The math doesn't work, never will. We need better technologies. One day we’ll have 3D printed kidneys from our own tissue, but until then, we need more people willing to be donors. I'm one of the lucky ones. I've got an incredible wife who actively wants to give me a kidney. I'm genuinely astounded at her generosity. I had two close friends offer one of theirs. That kind of support is overwhelming, and I don’t think I can adequately explain how much the offer means. It's on me now to lose the weight I need to lose. For three months I did hemo, three times a week for 3-4 hours at a time. I took a laptop or my iPad and worked to pass time. I saw people – young and old – come in, do their time in relative misery and leave, just to come back in 2 days and do it again. I saw a young woman, 25 at most, who was back on dialysis after her body rejected her third kidney. She’d been on and off dialysis since she was 9. I can't imagine. I hated hemo. Every second of it. It was sometimes painful. It was always exhausting. About the time I would recover from a session, I had to do another. I switched to peritoneal dialysis (PD) in July 2014; it would allow me more freedom, they said. It wouldn’t make me feel tired. I wouldn’t have as many dietary restrictions. I’d be more in control of my own healthcare. It was the right move for me, I don’t regret doing it. I still work, and I travel. And PD is about 100x better than hemo, at least for me. But my reality is I go to my bedroom around 7:30 p.m. every night to get hooked up to a machine. I have a 12-foot tube that goes from my access port to the dialysis machine, and for the next 10 hours, I’m tethered. I can get anywhere within 12 feet I care to go (that’s enough to go to the bathroom or across the room to turn on the ceiling fan). If I’m traveling and I need some extra mobility, I can add an extension, but 24 feet is the max. I'm self conscious about the bulge where my port sits on my stomach, certain that everyone can see, though I doubt most actually do. But I rarely tuck in my shirt just in case. It means early dinners, no late night movies, no unplanned trips out of town. It means declining dinner parties and missing meteor showers. It means my wife suffers, too. She wants to be with me, and I have to be in the bedroom. I see the nurses and nephrologist at least twice a month, sometimes more. Any cold symptom could be a cold, or it could be a symptom of peritonitis, so at even the suggestion of illness I’m put on antibiotics. I take lots of meds. We have to keep the area where I set up treatment very clean, which means we had to ban our pets from the bedroom. It took me several months to not feel terrible when the cats would cry outside the door because they wanted to sleep with us. I still feel bad about it – they don’t understand why they can’t sleep with us anymore. I mentioned the weight I need to lose. Every day, I walk around with 2 liters of dextrose solution in my body, which means I absorb 400-700 calories just standing here. I don’t tell you all this for pity. I share this with you in the hope that if you know someone in need, and you can help, that you try. It’s important. There is currently one kidney for every five people in need. That math will just never work.